Help Us Identify, Treat and Prevent Childhood Heart Diseases. Participate in the Heart Institute BioRepository (HIBR).
What is the purpose of this study?
The goal of this project, called Heart Institute BioRepository (HIBR), is to collect and store samples (such as blood, urine and tissues) that can be used by researchers to study and develop new ways to identify, treat and prevent childhood heart diseases and conditions.
Limited personal information will also be collected.
Who can participate?
Infants, children, teens and adults who have heart problems, or have a sibling, parent or other family member with heart problems, may be eligible to participate.
In addition, parents, siblings and other family members without any heart problems may also be eligible to participate as healthy controls.
What is involved?
Participation in this study will involve the collection of samples, which will be coordinated and obtained during you or your child’s scheduled clinic visit or procedure. If you would prefer to come in at another time to participate, a separate research visit can be schedule to collect the samples. Once the samples have been obtained there are no additional follow-up research visits planned for this study.
Participants’ privacy and confidentiality will be protected carefully. Donors’ identities will not be revealed to the researchers using the samples. All samples will be de-identified and stored for future use in the Heart Institute BioRepository (HIBR) at Cincinnati Children’s.
What are the benefits?
You or your child will not receive a direct medical benefit. However, the information gained from this study may help others who have heart disease in the future.
Will I get all the facts about the study?
You, as a parent interested in having their child participate, will be given a consent form that thoroughly explains all of the details of the study. The form covers all of the procedures, the risks, the benefits, the pay, who to contact with questions or concerns and more. A member of the study staff will review the consent form with you and will be sure that all of your questions are answered.
What are the risks and discomforts of the study?
There are minimal risks associated with this study. Possible discomforts or risks will be discussed with participants, parents or guardians interested in learning more about the study.
The privacy and confidentiality of patient information will be maintained in accordance with HIPAA regulations. Research staff at Cincinnati Children have completed HIPAA clinical studies training. Any information about you or your samples, or those of your child, will be kept completely confidential and secure according to institutional guidelines.
Do participants receive pay, compensation or reimbursement?
Participants will not be paid for their participation in this study.